Is it the medications???

Good evening everyone! I finally managed to get all the kiddos to bed, and with 30 minutes of time to myself before my bedtime!! That is a rare treat here lately.

I have a question and maybe this one is best left to the PDR, but I am hoping that some of you may have a few pointers. There was an instance in the last month where we phased out one of our difficult child's medications because it was causing more adverse side effects than it was helping. Ever since she caught on to the idea that some of her medications may cause her problems, she has lost even MORE control over behavior and has gotten even more out of control, and then when we talk about it after she calms down, she is blaming her behavior on her medication. We had behavior problems before the new medication was added (the Focalin, 10mg) but they were at least somewhat controllable. While taking the Focalin, we found her to be uncontrollable and even violent at times, kicking and hitting at anything, or anyONE she could get her hands on. This is what prompted us to stop the medication (after a long conversation with the PDR about what we were seeing from her). When we stopped the medications, we expected that after a week or so, things would go back to the way they were, but they have not. She is still blaming her medication for her fits of rage and violence. The ability to separate the behavioral issues from medication side effects is very important especially now that she will be seeing the new PDR next month, who we are already pleading with to focus MORE on the ODD and BiPolar (BP) and LESS on the ADHD until the others are controlled. We expect that there will be some dramatic changes in ALL of her medication, so we want to make sure that PDR is giving her stuff that will help, not hurt her. I know they are trained to watch for things like this, but our difficult child can be very manipulative, even with highly trained professionals, as she has DUPED her current PDR on SEVERAL occasions. I just don't want to see that happen again.

I also wanted to note that, while we have all of these behavioral issues at home, we hear NOTHING but glowing reports from the school about how GREAT she is there, and she also spends after-school hours with my parents, who have NO behavioral problems with her at all, even when she is asked to do something she doesn't want to do. I just don't understand when she goes around telling everyone that she doesn't behave this way on purpose, that she CAN'T controll it, how she manages to control it wonderfully for everyone else but us???????? I guess I should note that my mother, who she spends her after-school time with has a degree in psychology and is trained to handle children with behavioral problems, has been a huge help. She has given me much insight the last few months, pointed out some things that I should watch for, and brought up different things that need to be discussed with her PDR and her therapist.

Up until the transition to living with us took place, she had hit what her therapist calls a "plateau" where she was still acting out in ways that needed to be dealt with, but she was not a danger to herself, or to anyone else. At that point, her therapist had decided to keep seeing her, once a week, but was not in a huge rush to try to force our difficult child to talk. (She is unwilling and completely opposed to talking about her feelings with her therapist, they sit there for an hour while she tries to find every excuse and distraction she can to avoid answering uncomfortable questions). But now that things have spiraled out of control so quickly and she has become a danger to herself, as well as to others, she is finding a more pressing need to get all of this out in the open and dealt with ASAP. The issue remains, that she refuses to seek help with her problems, and without working on them, she is afraid that difficult child is going to continue to get worse. There has been discussion of admitting her to an Residential Treatment Center (RTC), which we have been trying to avoid, especially after everything she has been through in the past, but if it comes down to it (since she has been "SASS"ed) and a recommendation is made for Residential Treatment Center (RTC), it will be immediately court ordered and we will not have a choice in the matter. In Illinois, SASS'ed means that at one point or another, someone has called the crisis intervention line, and they have sent someone out on an emergency call to evaluate the difficult child. If the SASS worker finds that she needs to be brought into their program, they are assigned a worker who will see them at least once a week, sometimes everyday, if necessary, and will monitor their progress. If it is determined that a child needs to be put in this program, the workers in the program have the power to admit her to the Residential Treatment Center (RTC) of their choice, at any given time, without parental consent. The following day, a court order is issued that will forbid a parent from being able to withdraw a child from the program until the Residential Treatment Center (RTC) feels that she is rehabilitated. I know explaining it like that sounds HORRIBLE, but these workers are very well trained and they will not ORDER a child into an Residential Treatment Center (RTC) without SERIOUS concern for the safety of the child, or others in the child's presence. So, it isn't like they just run around the state picking off problem children and shoving them into some hospital. Some of you may be familiar with this program in IL, or some of you may be involved with a similar program in your own state. But the benefit is, with your child in this program, there is always a crisis worker available 24/7 that has full access to your child's mental health record (case files are studied on a regular basis, so when a worker is called to a home, they already know much about the child they are going to see), so they aren't just some random person showing up trying to deal with a difficult situation with no knowledge of your child's background (which is most of the time what you will get if you call any normal 1-800 crisis line.)

Tonight, our difficult child was in a very "oppositional" mood, and at one point, looked at one of our two dogs (the one she doesn't particularly "like") and for no reason stated that if he stuck his tongue out at her and tried to lick her, that she would take a pair of scissors and cut his tongue out. (ALL sharp objects in our house have been locked in a box that only her father and I have access to, so this isn't a possibility, but the thought that she said it was enough for me.)

Per the advice of her therapist, there were also important issues that needed to be discussed involving keeping everyone in the house safe. I made sure to explain very clearly to her that if she gets upset and turns violent, that crisis will be called immediately, and she will be properly restrained until they arrive. At this point, upset that we would restrain her, she comes out and says that if we leave bruises on her she will "sue us". Which is a very complicated situation in itself, because she was placed in our home BY CPS, so they are already very involved in our home, and our difficult child's caseworker is fresh out of college, our difficult child is her first real "case" and she has no background whatsoever with strong-willed, defiant, and/or violent children. She is more worried about one of us accidentally twisting our difficult child's arm while she is fighting restraint than she is that, if left unrestrained, our difficult child may seriously injure someone, possibly one of our smaller children.
This has become such a concern, that, her therapist, who is supposed to be coaching us on the proper time and the proper techniques to restrain a child, is scared to do so without them telling her it is okay, because she doesn't want them coming back to her one day in the future saying that it is all her fault that our difficult child got a bruise on her arm while fighting restraint by one of the techniques she told us to use.

Sorry this is so much, but I just needed to vent a little tonight. Hope to hear back from some of you again, I was very comforted by the responses I received to my Introduction Post.

On the subject of why can they hold themselves together away from home, then behave horribly to us - it's common. What I think is happening - they know we love them unconditionally and it's the people they are closest to, the ones they most take for granted, that they relax their guard with. They CAn hold it together but not always. Only for shorter times and only with huge effort. That effort comes at a cost, which is a backlash when they finally relax and let go. And we tend to cop the backlash.

What we did seems paradoxic, but it worked for us. We simply stopped stressing so much about any behaviour that seemed to be backlash or stress-related. As much as possible we ignored it. If we had to say something we spoke gently and calmly, in total contrast. We did our best to never shout back or loudly get angry. The result - in time, difficult child relaxed, felt more secure, less on edge even at home and it then became easier to hold it together at home because he wasn't constantly being criticised like he was at school. He might come home after a bad day and rage at me, usually beginning with, "I HATE Mrs C_. She's been mean to me all day. And I HATE Peter. I want to smash his face in! I HATE Teresa..." and so on. Depending on how I handled it, the rage would escalate and include me, or I could help calm him down until he could tell me why he was angry. But if I chastised him for speaking about other people like that while he was still venting, I would lose my chance to find out why. And WHY is important with him because it's so hard to find anything out when he has trouble communicating.
Often once he'd vented he calmed down enough to begin to see that maybe he was being a bit unreasonable. usually, though, I had to wait until I had more information (from the teacher, from the Communication Book and from my 'spies' among the other kids) before I could begin to defuse the problems. But by my helping him to defuse, he learned to see that I was a helper, not an obstacle.

Relax the rules, and the rules end up getting followed anyway, if you set the example instead of give back what she gives you. Sounds weird but it can work.

Concerning her blaming the medications - she's trying to find a reason and is frustrated and angry with herself as much as with anyone. difficult child 3, soon after he was told about his autism diagnosis, began to say to his teacher, "I wasn't able to do that task, because of my autism."
The teacher's response was to be critical of me for having told difficult child 3 about his autism (but he had to know). But what was really happening - difficult child 3 was TRYING to get his own handle on himself and where his problems were compared to his abilities. He wasn't making excuses, merely explanations. He knew that having autism meant that he can't just walk away from something that's difficult, he just has to work harder than other kids to get it right. That's not fair, but life isn't fair. Besides, other things come easier to him than other kids, because of his autism. We love him as he is, but he has to learn to get on with people in this world, so he has to learn to fit in even if it's a sham. Meanwhile, if he can explain to people that a certain task is difficult and could they give him a bit of help, it's no different than me asking someone to run an errand for me because my legs won't take me there in time.

I know you want to help your daughter. The trouble is, she's a package deal. Her problems are a mix and they're interconnected because they are an integral part of who she is. You have to love the whole package, even while you're trying to minimise the impact of some of these aspects to her.

There isn't a remedy that will perfectly fix one problem and not touch something else. Treating a medical condition is not like adapting a recipe for salad dressing. With salad dressing you add vinegar, and oil, to taste. Maybe a bit of salt and some herbs, for flavour. Each ingredient can be varied in quantity and even left out. Each ingredient tastes different to the others. Each ingredient is tasted on a different part of the tongue.

When you treat one part of the child's problems, you are going to affect other, apparently unrelated problems. With difficult child 3, we were told he has ADHD and autism. We treat the ADHD with medications, but this has also had an amazing positive benefit to his autism. When he had an allergic reaction to some cough medicine he had to take antihistamines to stop the hives. But the antihistamines affected his treatment for ADHD, which then followed on to hamper his speech (via the problems with his autism).
Everything was connected and the balance got thrown out even with apparently unrelated medications.

When your doctor treats your child he makes a judgement on which medication regime will have the best outcome overall. Much as we'd like to, it's very hit and miss to try to treat one facet with priority and not worry about another bit.

We dealt with the ODD symptoms not with medications, but with behaviour management that we worked out for ourselves, and then with help from a good psychologist. But if he hadn't been taking his medications for ADHD it would have been more difficult for us.

But that's our son. Your daughter will be different because kids always are. it's a lot of trial and error trying to get a good treatment regime going. And it's not all medication, and it's not all the child. Even if our other children are perfect and we would qualify as the best parents in the world, sometimes we have to change the way we do things in order to be better able to direct and teach better behaviour, in a way that this particular child can take on board.

She has a lot of problems and I have no easy answers for you. I'm sorry. You really have your hands full, especially if she's not talking to therapists when she really needs to. From her point of view, it's all very immediate. She can't see that SHE needs to take control of her health and to do this, she has to open up. If only she would you would be able to give her more control over her own health care, at least by being able to talk openly and frankly about it. Until she can, it sounds like you are doing as much as you can. I'm just concerned that you're maybe expecting too many miracles from the medication, when there is much more to this, it seems.

If your child says it's the medications making her working, I'd believe her. My son got aggressive and mean on all stimulants. It turned out that ADHD was the wrong diagnosis. I have bipolar II and Ritalin made me so depressed that I got suicidal. It's not for everyone. If your child has a mood disorder of any kind, many mood disordered kids can never take stimulants, even with co-morbid ADHD. It makes things worse many times. It's up to you what you do, of course, but if the current professionals have not helped him, I would get another opinion. That's exactly what we DID do when my son just wasn't responding right. It is common for kids with mood problems to be able to hold it together at school, but then you get it tenfold because they have to let it out (I was one of those kids). Hugs--sounds like you're burning out. Take time for yourself, if you can. Look into respite!!!

Thank you all, very much, for your responses. I do want to point out, however, that although I have not listed my diagnosis on my signature, I have a "history" if you would like to call it that, with psychiatric problems and other things. I went through the ringer as a teen myself, and I know what to expect and NOT to expect from psychiatric medication. I know that they are not "MIRACLE CURES" and I don't expect that they will get the perfect balance and make all the problems go away. I know there is more to it than that, but at the same time, I also know that A huge part of treatment when it comes to medication is CAREFULLY weighing the pros and cons of taking vs. not taking a particular drug and whether or not the benefits are outweighing the side-effects. My biggest concern is that her therapist agrees with me that the side-effects of the medications she is on for her ADHD are probably making her problems with the ODD worse,and that she would prefer to see the PDR focusing more on the behavioral aspect of things right now than her ADHD. With that being said, I have heard so many people in here talk about getting an INCORRECT diagnosis on ADHD, and I am beginning to wonder if this is the case with her. And you must understand, we have had a whole string of problems with our current PDR that have lead up to our decision to seek a second opinion, it isn't like we feel that she is not doing her job, or that she isn't medicating her like we feel she should, it is just that she seems more interested in the "labels" that she has given our difficult child, than the actual symptoms she is seeing.

She has sit across her desk from our difficult child SO very MANY times in the last few years, even before we were around, and has never once talked to her in private, without another adult in the room. Any PDR I ever seen growing up ALWAYS had to talk to me alone and then consulted separately with my parents afterwards. Also, even knowing the things that she knows about our difficult child's past with living with her BIO mother, she still has a problem with a teenaged girl living with her father instead of her mother, and she expressed that very biased in FRONT of our difficult child!!! Not to mention she has heard our daughter tell her that she is worried about herself because when she gets angry or upset, she feels as though she cannot control what she does. I would think this would raise a concern from a PDR, but it doesn't, she just says "hmmm" and goes right on past it like it was never brought up.

Anyways, I just thought I would throw this extra little tidbit in here, and to make sure that you all know I don't expect miracles from the medication, but what I do expect is that whoever she sees would be willing to re'evaluate to ensure that the medications she IS taking are NOT working AGAINST us!

Do you think she has enough insight to be able to discern if it's the medications that are the source of her behavior? I just ask, cause I know my difficult child does not have that kind of insight. She has very litte insight at all. But if she hears a medication will do something, she will run with it. (If she hears anything will do something, she runs with it.)

That's EXACTLY what I think is happening in our case. She hears anything will do something, and she runs with it. However, it is very difficult for me to be sure. As I have mentioned, she has only been living with us since January. We have been pretty involved with her for much longer than that, but before CPS placed her in our home, she was only spending weekends with us, and at that point, this was kind of a "getaway" place for her, away from the normal life stresses, so we were at that point not seeing any of these behaviors. It seems that we went from being her break time out from chaos, to being the CAUSE of the chaos....or at least that is how she makes us feel, and she will tell us that it is our fault that she has to act that way because we try to make her do things she doesn't want to do. And also, has anyone ever noticed that their outbursts are SO UNPREDICTABLE?!?! If something huge has to be dealt with and you expect they will lash out at you the very second you bring it up, they end up handling it WONDERFULLY. But then it is the littlest things that cause them to go off???? Just an observation I have picked up on with our difficult child, and wondering if this is the case with anyone else....

<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: neednewtechnique</div><div class="ubbcode-body"> And also, has anyone ever noticed that their outbursts are SO UNPREDICTABLE?!?! If something huge has to be dealt with and you expect they will lash out at you the very second you bring it up, they end up handling it WONDERFULLY. But then it is the littlest things that cause them to go off???? Just an observation I have picked up on with our difficult child, and wondering if this is the case with anyone else.... </div></div>

You should read the Bipolar Child if you haven't already... I don't think that the adhd is a misdiagnosis for a lot of us it is that it is very difficult to seperate if it is truly a seperate disorder or a symptom of the actual condition... Like a symptom of the Bipolar or Autism... for my difficult child she was diagnosis'd with- severe adhd combo type by a nuero-psychiatric, but when we found a great psychiatrist in Chicago, she diagnosis'd the BiPolar (BP) in my difficult child and basically said it really doesn't matter if she has adhd right now because of her severe mood disorder you would never treat the adhd first until you had her stabilized first... and then you see what you have left and treat those symptoms next, whether they are truly co-morbid... it is hard to say. It is vary hard to be just adhd and odd, at least that is what the neuro-psychiatric and psychiatrist explained to me.
I just left the the Northern Indiana area...

That is exactly the thing that I keep trying to make our PDR understand. With the severity of her mood disorders, BiPolar (BP) and ODD, I am more concerned at this point with stabilizing them than the ADHD, and once we have the BiPolar (BP) and ODD under control, THEN take a look at the symptoms that are left, and go from there. medications or No medications, I feel like she is putting all her focus into properly controlling her ADHD, and completely ignoring the LARGER problems. Seems like misplaced priorities to me. I know I keep saying this everywhere I write, and hopefully after next month, you will never hear it again!!! Well, at least not from me... but the new PDR has a "plan" to focus first on the BiPolar (BP) and ODD, then go back to the other stuff after that is taken care of, which is ALL we were EVER asking from her current PDR, who doesn't care to listen to anything we say, or anything that our difficult child says. (Note, this is also the woman with such a biased against a father raising his teenaged daughter, that she would rather see our difficult child go back to living with her drug addicted mother and her mother's convicted felon, sex offender boyfriend, than to continue living with us.) Just one more reason added to our list of things that prompted us to get a second opinion regarding our difficult child's mental treatment. Plus, the new PDR is linked with the Mental Health Center that our daughter's psychotherapist and crisis intervention worker are employed by. Which makes things easier because she has very easy access to all of the therapists notes during counseling sessions, and will also be paged personally as an FYI if we ever call crisis, and will immediately contact us the next day to follow up herself. I really think this will be a great asset to our difficult child's treatment plan, and I am so fed up with everything right now that I would be extremely happy if the new PDR wants to wipe out all her medications for a few weeks to monitor her symptoms and then just start all over!!!!! Although some of you are probably thinking that would be a terrible thing to do to a child, I am already convinced that the medications she is taking are hurting her more than helping her, so I don't really have any concerns that she will get WORSE if we wipe everything out for a few weeks, plus if the end result is better for her, then I think it would certainly be worth it to try. Surely it would be much more accurate for a new PDR to be able to monitor our difficult child's "raw" or "pure" symptoms without the effects of medication to form her own opinion of our difficult child's symptoms and diagnosis.

I would like to hear some thoughts on this idea...DIRECT HONESTY, because as I already mentioned, I am sure that some of you think that this would be a terrible thing to do to a child, so if that's the case, say it! You won't hurt my feelings any. But I am also interested to see how many of you agree.

I believe that's what is called a medication-wash. I'm also under the impression (but not sure as I haven't had any experience with it) that it's done inpatient. At the very least, it's under doctor supervision and they may titrate down the medications rather than just removing them outright, as that might cause adverse reactions. I don't think anyone here would think you are horrible for trying to do right by your child. I know I certainly wouldn't. Whatever you and psychiatrist decide is best is what you have to go with. It may very well be called for in your case. Other members here have had experience with it and can tell you more.

Conventional wisdom says to add one new medication at a time so if there are any adverse reactions, you can pinpoint which medication is causing them. Just like when introducing foods to an infant...one at a time to watch for allergic reaction.

I hope your difficult child realizes, at least one day, how lucky she is to have you.

Well, I am wondering if they would or would not hospitalize her for that, simply because the only things that she is taking now are the Concerta and the Clonodine (the Focalin has been officially removed from her medication list), which the clonodine is at such a low dose now I don't really think it is doing much for her anymore, other than her having the security that she is still taking a pill before she goes to bed that she has been told will keep her from getting nightmares. I think that by now if doctor gave her a placebo and told her it was the same thing, she would never know the difference, but the minute she doesn't have that crutch anymore, she would start having problems again... isn't it strange what your own mind can convince your body of if you believe it enough?!?!?!

You should always do a medication wash under the supervision of a doctor, but removing Clonidine and Concerta would most likely not require an inpatient hospitalization. Any stimulant can be given one day and not the next (we give difficult child 1 a stimulant on school days only) so it is not a problem to remove it cold turkey. However, you will most likely see hyperactive behavior for a few weeks after as the body adjusts to not having Concerta. Because it is a blood pressure medication, Clonidine needs to be discontinued carefully. If it is removed precipitously, it can cause a dangerous spike in blood pressure. Definitely ask your doctor how to disconinue it.

FWIW, my difficult child 1 was diagnosed with ADHD and anxiety 4 years ago. He just went through neuropsychological testing, and the new neuropsychologist says he doesn't think difficult child 1 has ADHD at all. He believes difficult child 1's inattention is due to significant anxiety and depression.

My son is BiPolar (BP),adhd, odd. You have to start with a mood stabilizer when BiPolar (BP) is involved. When we started this journey the neuro started with adhd medications. They caused him to be worse, his hyperactivity was through the roof. With BiPolar (BP) that is what happens on the stims. The fact that he is BiPolar (BP) should tell your psychiatrist that. Is he a pediatric psychiatrist? This makes a big difference because BiPolar (BP) presents itself differently in kids . Regardless though, with a BiPolar (BP) diagnosis you start with a MS. I would find a new psychiatrist that specializes in BiPolar (BP). The stims are doing more harm than good . It has been mentioned to get the book The Bipolar Child by Demetri and Janice Papolos. They have done extensive research on child BiPolar (BP) ,going to parents of BiPolar (BP) formums , getting info right from the horses mouth so to speak. They also have a website with wonderful info more focused on early onset BiPolar (BP). http://www.bipolarchild.com/
If your daughters psychiatrist wont listen please find a new one. And as far as her telling you the medications are making her feel worse. I believe her. This would make total sense. Once the mood is stabilized you might find the adhd gets better or it could be more prevalent, but it is still important to get the ms in place first.Good luck . I hope you find a psychiatrist that listens.

You had also mentioned night terrors as a part of PTSD in one of your prior posts, these are also a symptom of BiPolar (BP)... my difficult child has severe night terrors, worse when she is not medicated.

Hi,
just wanted to add my agreement with Linda. My difficult child 2 was diagnosed with ADHD and Obsessive Compulsive Disorder (OCD) and Depression--took quite awhile to realize that she actually has a dissociative disorder and that is what makes her appear to have ADHD and Obsessive Compulsive Disorder (OCD). She had been on Concerta and Effexor and did not want to continue because she felt they weren't really helping and they weren't. She is not taking anything at this time but has been working with an excellent therapist on the dissociative disorder and is doing much better now. It really is confusing, isn't it?
Jane

Again, as always, THANK YOU ALL for your imput. This has given me some VERY helpful information. Does anyone here have a good site to visit that describes PTSD? As I mentioned in my intro, I have not studied this disorder much yet, and I am interested to see what I find when I research...

We will be seeing the new psychiatrist on April 6, but in the meantime, she has one last appointment with the old psychiatrist, which is Monday. I intend on going in there to her with a lot of new information and seeing how she reacts when I ask why the ADHD is her primary concern with all this other stuff going on under the surface. I am not sure what Dissociative Disorder is, either, but maybe I should look this one up too...